My journey on the ketogenic diet - part 2

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Sharon Ross is following the ketogenic diet in an attempt to control her seizures. In her second blog she updates us on how things are going.

I did not do too badly at school, but last week I went to the hardest lesson of my life – a half-day course on the ketogenic diet at the National Hospital of Neurology and Neurosurgery in London.

It started quite gently – the nutritionist asked what I, along with my mother and the small group of patients and their family members (who like my mother had come along because they wanted to assist their loved ones in their new undertaking) knew about the diet.

We were a well-informed lot – we knew it was a low carb/high fat diet; we knew that ketones were a bi-product of the diet that could help to reduce seizure activity and we knew that it was going to be hard work. Our little group thought we were doing quite well.

Calculating carbs and fats

And then we were hit with the tables. A very long list of tables. They listed the amount of carbohydrates in various products. For example did you know that 8g apple, 13g onions and 250g mushroom each contain 1g carbohydrate? And don’t get me started on bread, rice or pasta (11g sliced white bread has 5g carb etc etc). These are the tables for which the next three months, at least, I am going to live by.

Based on my weight, height and activity levels the nutritionist had calculated the amount of carbs and fat I must have at each meal or snack (thankfully she was flexible with proteins for the moment). There was to be no wiggle room she stressed – I must have the amounts she had stipulated, no more, no less at every meal.

So I must know these amounts like a mantra – breakfast, lunch and dinner 4g carb, 40g fat at each meal; mid-morning and afternoon snack 3g carb, 25g fat; and bedtime snack 2g carb, 20g fat. There is to be no noshing – no ‘oh I just fancy having that’. Everything I eat must be measured in advance like a military exercise.

Unlisted foods

And then came the crunch time – the calculations. What should I do if I want to eat something not on the list? For example I want to use my favourite pasta sauce (to flavour fish or meat but definitely not pasta). It contains 11g carb per 100 gram. How much of it can I use for my lunch? And so, under the guidance of my nutritionist, I learn to calculate that I can have 27g pasta sauce with my meal to meet my carb requirement.

But that’s not all. I also have to take into account my fat requirement. This tomato sauce has 2g fat in it per 100g. That’s way below my fat target. So I’m going to have to add some double cream to my pasta sauce which could be quite nice and then have a high fat dessert. Of course I still have to limit carbs and also remain kosher – Jewish laws stipulates that I can’t consume milk and meat together in the same meal, so I will have to have tomato and cream sauce with fish which doesn’t sound too bad. And to top it off, at least at the beginning of the diet, I cannot use meat or cheese or oily fish towards my fat target.

Hardest challenge

It was indeed a very difficult lesson to take in – and with a foggy brain like mine, this is the hardest challenge of my life.

But the nutritionist was upbeat – it is possible came back the message. You can do this – other people have. But it won’t be easy and there are no guarantees that it will give you the results that you want. She was on our side - I’ll be there to help you all the way, adjusting the plan if necessary, she stressed. But, the other patients, like myself, must have been pretty desperate – fed up with the epilepsy that is destroying the quality of our lives, because that is the only reason you would take this diet on.

Meticulous planning

I came back from the seminar with my goody bag – two recipe books, one electronic device which will measure my ketones and glucose levels daily via a blood test, lots of tables containing lists of carbs and fats in various products and notes about what to do if you are unwell (keep to the diet and check meds are low carb!). Plus we also got the number of direct line to the dietician, which is now listed as a favourite on my mobile phone.

My mother and I were exhausted. We had entered into a world that we didn’t know existed. We were uncertain whether we would be able to stay the distance. But we must try. So next week, after spending sometime meticulously planning each meal I will start the diet – just with breakfast at first and then slowly building up over a week to include every meal. I will let you know what happens.

The views expressed here are those of the author and not necessarily those of Epilepsy Society.

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